International Leprosy Association - History of Leprosy

The Continuing Impact of Isolation: A Story from Orissa, India

The management of leprosy has been subjected to changing ethical imperatives. What seemed to be the right thing to do in the late nineteenth century and the early twentieth century, now seems to constitute an inhuman disregard for the person afflicted with the disease. Before the advent of a public health approach to leprosy, from the late nineteenth century, people affected by leprosy were isolated in leprosy colonies or leprosaria. In some countries, they were forcibly detained, relinquishing their self-determination and autonomy for the greater good. Some still live in those neglected and often abandoned places without electricity or easy access to water, while many others with disabilities have been displaced and now illegally occupy land, where they form their own semi-independent communities. Today prejudice continues to the extent that they are informally discouraged from seeking political representation, experience difficulties in making marriage arrangements, and may be denied basic medical care that would be afforded to any other member of society. Additionally, the “taint” of leprosy clings to their children and grandchildren.

These traces are evident in some of the still-existing places in Orissa, in, for example, Hatibari, outside Sambalpur. I travelled there with two people who had worked in leprosy: Dr Shubha Pandya from Mumbai who had worked with Dr Antia as a neurophysiologist; and Dr Jeyadev Sahu who as a physiotherapist and medical worker had been involved in Orissian leprosy work. In addition, both had also written doctorates on the history of leprosy in their retirement: one on leprosy in the Bombay presidency and the other on leprosy in Orissa.

Together with our driver Raja, we travelled the twenty-four kilometres outside Sambalpur, and six kilometres along an unsealed road to get to Hatibari. The Hatibari Health Home had been established by Isaac Santra in 1950, as a model agricultural colony. Isaac Santra, Orissian born and trained, had worked with Ernest Muir in Calcutta at the School of Tropical Medicine and at leprosy colony at Purulia. He had also conducted numerous extensive leprosy surveys throughout India. His dedication to Hatibari took place in the later years of his life. He died in 1968. For the first two years of his work there, he would cycle the twenty-four kilometres from Sambalpur. Eventually he built a house in the colony and lived there. I suspect that Hatibari was, from his point of view, the best solution for the people he had seen.

The colony was designed to be self-supporting, and it was built in a large area with dams and potential for all sorts of farming. By 1963, the Government of Orissa had taken over its management, and then handed it to the Orissa State Branch of the Hind Kusht Nivaran Sangh (HKNS).*1 It is no longer self-sufficient, although voluntary organisations go there to help the people produce craftwork and weave and dye cotton fabric for sale.

When we arrived, we spoke to four people who were sitting outside watching us and wondering what we were doing. These were people affected by leprosy, who had finished their treatment but had been at Hatibari for such a long time there was nowhere else for them to live. There was one woman with an undressed, ulcerated leg. She seemed to be struggling for breath and appeared to be suffering from oedema and possibly renal failure. She needed medical attention. We asked when the medical officer could be expected, and they seemed to be unsure. (With promptings from Shubha and Sahu, and offers to take her to the hospital at Baripada, the medical officer would later telephone us to reassure us that she had been attended to).

The people still living at Hatibari have no electricity and no running water, but this is not unusual for people living in villages in this part of the world. We went to the kitchen where the cooking was taking place. The fire was going and food was being prepared. The large open-air kitchen was the heart of the whole settlement.

We walked down Isaac Santra Road. The bricks lining the path were the remaining evidence of a road that had been built by the patients. Jeyadev Sahu reminisced that there had been no second generation of doctors to take over from Santra. Both Jeyadev Sahu and Shubha Pandya spoke about an article in Leprosy in India, the “Leper [sic] Poets of Orissa” in which in a poem the author refers to his own affliction: “From my own personal experience I can add that nothing gives me so much joy (now when I am passing through the disease) as taking to writing, especially such matters as give some interest in research, something new as it were, to give to the people.”

One of the inhabitants of the colony accompanied us and told us how his marriage engagement had been broken off when it was discovered that he had leprosy. After that he did not to attempt to marry. He told us that sometimes relatives would visit, but in the minds of the locals, “Hatibari” meant “leprosy”.

Santra’s house was located amongst the trees. It was a small and extremely modest stone house, with three rooms, but enclosed like a retreat, in an open forest. Its peacefulness was evident. It was the perfect place for recollection in the later stages of one’s life.*2

As we left, we asked some of the men if they were able to vote or stand for election. They told us that theoretically they could, but they didn’t have a representative. We asked if there was a reason why they didn’t have a representative. They told us that they had been refused a ticket that would enable them to stand: so officially, they were not disbarred, but informally, they had been.

The people here have been cured of leprosy, but they are still marginalized from society, forever tainted by their association with Hatibari. In a generation or two, these people and people similarly marginalized will be gone. They are left over from the leprosy policies of the past: living evidence of the attempts to find a way of dealing with the disease. Strangely enough, Hatibari grew out of the ideal of an agricultural colony – a health home, rather than from the missionary asylum model, and, as such, it would have seen itself as part of a novel, humane, and experimentally regenerative approach to leprosy work.

The person with leprosy, designated in those days with the derogatory term “leper” was the subject of this attempt at social and physical reconstruction and containment. These subjects emerge at the intersection of medical, legislative, and ethnographic discourses that can be traced from the mid-nineteenth century, when the susceptibility to the disease was situated in a discourse of excess of all kinds, both excessive deprivation (involuntary and voluntary) and the excessive indulgence of the worshipers of Jaggernauth at Pooree. (Royal College) Excessive practices were associated with religious devotion and the physical rigours endured in pursuit of religious obligations or alternatively with the excessive self-indulgence that came about through pursuit of sexual gratification. The people who fell prey to the disease, as a result of the excesses to which their bodies were subjected, became beggars and descended into criminality. This identification is implicit in the 1889 and 1896 Leprosy Bills and the 1898 Lepers Act, which targeted vagrants and paupers. (Buckingham)

These ideas about leprosy are also part of a complex of discourses that take their character from fin de siècle ideas of degeneration. Fears associated with both cultural exhaustion and racial hybridity find expression in these theories. In addition to the dangers of excess, people were causalities of change. The civilising process had occurred so quickly there had been no time to adapt, and those afflicted with leprosy were its casualties. As its therapeutic counter, the agricultural colony in the form of the Hatibari Health Home offered a retreat.

The idea for the model settlement developed in 1920 when the Mission to Lepers held a large conference in Calcutta and superintendents of the various asylums gathered to discuss their work. (Report 1920) Ernest Muir believed that leprosy was symptomatic of physical, moral, and cultural stress. He generalized that the leprosy amongst the aboriginal tribes of Orissa was evidence of a transitional stage in civilization. These people were located on the boundaries between the primitive and the civilized, the industrial and the rural, as well as geographically, between the plateau and the plains. Leprosy did not occur amongst those who lived a fully tribal or nomadic life and neither did it occur amongst those who were highly educated and civilized, but amongst those “in the intermediate state”. This was understandable because “Unfortunately the more easily adopted features of civilization are often the less creditable, and are apt to be physically and morally dangerous when not counteracted and controlled by its less easily acquirable safeguards.” As proof, in the geographical terrain at the transition point between the plateau of Chota Nagpur, where the tribes remain and before the descent to the plains, on the laterite slopes, “we find an incidence of leprosy which is one of the highest in India, so that the geographical demarcation as well as in the social and the industrial field the line of demarcation between the primitive and the more advanced marks the highest incidence of leprosy.”

The ideal of the agricultural colony began to become a reality in 1938 when Lt Col Verghese, the Director of Health and Inspector-General of Prisons, in Orissa, presented “A Scheme for Leprosy work in Orissa” which had been devised in consultation with Isaac Santra. It included surveys, propaganda, registration, treatment, and the voluntary isolation of infectious cases. It was hailed as an “experiment” that would be watched with great interest throughout India.

Leprosy colonies in each district would be foci for anti-leprosy work. The colonies themselves would be for the infectious cases or for those who needed treatment other than that provided by out-patient clinics. Hydnocarpus wightiana trees could be grown in the colonies as a source of income. The Forest and Agricultural departments would provide suitable sites with 100 acres of arable land each. (Leprosy in India)

By 1946, Isaac Santra wrote to the political agent of Orissa State suggesting that the feudatory states possessed “plenty of lands which can be spared for the colonies”. He cited the village tradition that required anyone with leprosy to leave the village. He was optimistic that “in a short time small colonies can be started in most of the Orissa states where leprosy is endemic and by isolating the infectious cases one can expect to stamp out the disease in a few decades.” (BELRA Report)

Santra became the architect of these model colonies. For Baud State, the Dewan was instructed that 640 acres be set aside five miles from Baudh. The colony was to look like a modern village. The cottages were to be evenly spaced. Roads, water supply, recreation areas, staff quarters, dispensaries, hospital, and patients quarters were all planned “in the style of a large village”. The plans included a hall, library, carpentry, smithy, houses for other industries, irrigation canals, a small bamboo forest, orchards, guest houses, and dwellings for religious ceremonies. The houses for the staff were positioned on the side from which the wind blew. The patients would produce at least half their food and to this end they would be given “a few acres of land”. They were required to bring their own bullocks and agricultural implements.

In Bastur state, people were encouraged to bring their families into the colony so as to make their life comfortable, but also to “give us the opportunity to observe the contacts, especially the children.” (Report on Two Colonies) In Dastur State, he wrote “One should be lenient to allow them to bring their family or attendant. Unless this concession is given it may not be possible for many to come voluntarily.” Disconcertingly, he also adds “Once they have come to our colony we can effect control measures like separating the children or doing the vasectomy.” (BELRA Report)

This work took place in a transitional period for leprosy work in India. Initiatives based on British medical activity can be observed to gradually become indigenous-based. Simultaneously, ideas about disease, and specifically about leprosy, can be seen to be in transition. Attempts to understand the occurrence of leprosy in specific locations amongst specific populations mobilised both nineteenth and twentieth explanatory models. This recourse to a variety of explanatory approaches is probably partly due to the imponderables associated with understanding transmission. What now remains are the places and the leftover people that even the medical officer manages to neglect.

Notes

*1 In 1950, the Provincial Branch of the Indian Council of BELRA, which had been working in the field of leprosy for 14 years, was formally dissolved, and the Orissa branch of Hind Kusht Nivaran Sangh was formed. This State Branch was affiliated to the central body of Hind Kust Nivaran Sangh (Indian Leprosy Association), New Delhi. HKNS has been playing a central role in the field of leprosy since the National Leprosy Control programme started in the country in 1954-55. HKNS was the nodal agency through which the Government used to implement activities where there was limited infrastructure available. Once the infrastructure was established, the HKNS was given the responsibility for managing the leprosy homes and hospitals or colonies in the State of Orissa.

*2 Later Santra’s daughter told us the story of the tiger that came to visit him – a story that he told his children. They asked him if he was frightened, but he said that the tiger sniffed him and then turned up its nose, saying “missionary”.

Report of a Conference of Leper Asylum Superintendents and Others on The Leper Problem in India, held in the Town Hall, Calcutta, from the 3rd to 6th February, 1920, under the auspices of the Mission to Lepers, (Cuttack: Printed at the Orissa Mission Press, 1920).